Category: Preparing for Death

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When the patient is family

— Perspectives on caring for loved ones during end-of-life

By Lora Parisien

Every day, hospice workers bring comfort to dying patients so that they may die with dignity and on their own terms. They extend grace and compassion to all, regardless of who they are or where they come from. This is the humble work of a Hospice of Michigan employee. This is the promise they keep: Every Person. Every Time.

But what happens when the hospice worker’s patient is a family member? Does having a hospice background make it easier to navigate the challenges of caring for a terminally ill patient when that patient is a loved one?

When she was just 10 years old, curiosity drew Sarah Beegen to the room in her family’s home where hospice staff were attending to her dying grandmother. “I wanted to know. I needed to know what was going on in there,” said Beegen. This same inquisitiveness led her to a career with Hospice of Michigan, where for the past 17 years, she worked her way from certified nurse assistant to her current role as manager of the not-for-profit’s referral center.

If anyone was fully prepared to care for a dying family member or insulated from the hardest aspects of death, certainly Beegen was. When her mother’s cancer became incurable, she “shut off my ‘hospice eyes’ and focused on other things. I didn’t want to see that mom was dying.”

The truth is, no amount of training or experience can prepare one for the death of a loved one — because dying is more than a medical event, it’s a deeply personal experience.

Hospice workers understand that both patients and their family members can struggle accepting life-limiting diagnoses. In 1969, Elizabeth Kubler Ross, a Swiss-American psychiatrist and pioneer in the worldwide hospice movement, identified five stages of grief. When faced with imminent death, denial, the first of the five stages, is a common reaction to change and loss. No amount of hospice training can derail feelings of grief. Denial is the defense against something that is impossible to accept.

“No matter how seasoned you are, you can never be prepared when the patient is your loved one,” says Beegen.

Tracey Pierce, director of marketing and communications for Hospice of Michigan, also found herself in unexpected territory when she reached out to her colleagues for help. In a matter of months, her mother- and father-in-law suffered falls, hospitalizations, and anxiety which led to a drastic decline in their health.

“It’s a different ballgame when you are on the other side. For as much as I thought I knew about hospice care, I realized how much I didn’t know. I’m grateful we had my work family to lean on. Hearing the stress in my voice, they calmly answered our questions and addressed our concerns with compassion and patience,” said Pierce.

That is the gift of hospice, a team of experts sweeps in and surrounds patients and families — and sometimes colleagues — with knowledge, skill, and compassion, providing wide-ranging physical, emotional, and spiritual support at a crucial time.

Beegen and Pierce both knew they needed help from the experts, the people she worked with every day. “If I learned one thing from my mother’s death, it’s not to be afraid to ask for help,” said Beegen.

“We always talk about providing care and dignity in hospice. It was evident in simple, nurturing acts, such as a hospice aide bathing my mother-in-law,” shares Pierce. That gave Pierce and her family the opportunity to focus on being present in all the precious moments they had left.

Redefining what was and shifting to what is now. Searching for meaning. Contending with change. Living day by day. Preparing for death. These are the hallmarks of coping with the terminal illness of a loved one. It is a highly personal experience, no matter who you are. Though it can be daunting, no one should face the end-of-life process alone.

Complete Article ↪HERE↩!

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Black Christian patients are less likely to receive their preferred end-of-life care.

— Researchers hope change that. 

by

Researchers from the University of Alabama at Birmingham published a paper in the Journal of Racial and Ethnic Health Disparities demonstrating the importance of respecting the deeply held beliefs of African American Christians to help provide equitable, goal-concordant end-of-life care to these patients.

There are two schools of thought among clinicians at end of life: aggressive care, which focuses on treating the illness or condition, and supportive care, which focuses on pain and symptom management.

In this publication, researchers demonstrated how the term aggressive care — used loosely by clinicians to describe care that can negatively impact quality of life for patients with serious illness — is often used to inappropriately label the preferences of African American patients.

“Our motivation through this article was to bring in not only the perspectives of African American Christians, but also to share the biblical and historical backdrop that can be instrumental in shaping their serious illness and end-of-life wishes,” said Shena Gazaway, Ph.D., assistant professor in the UAB School of Nursing and lead author of the study. “In collaboration with our wonderful medical colleagues, we wanted to acknowledge the origins of aggression and discuss how the labeling of care as aggressive with patients and their families can negatively impact care conversations.”

For patients with serious illness such as advanced cancer, dementia and terminal illnesses, the term aggressive care is used to describe courses of treatment that could potentially cause increased physical distress and psychological stress and a decreased likelihood of experiencing a “good death.” The Institute of Medicine defines a good death as “one that is free from avoidable death and suffering for patients, families and caregivers in general accordance with the patients’ and families’ wishes.”

“The data is clear — a larger proportion of African American families reported that their loved one did not receive care that is in accord with what they requested in the final days of their life,” said Ronit Elk, Ph.D., associate director for the UAB Center for Palliative and Supportive Care, and professor in the UAB Division of Geriatrics, Gerontology and Palliative Care and co-author. “We hope this article provides a careful explanation of why these values are so important to the African American Christian community and will strike a chord in many clinicians about the importance of respecting these values and not dismissing the beliefs that these patients and their families about hope and the miracles of God.”

In this article, researchers discuss how many Black Christian adults share a belief in miracles that shapes their end-of-life care decisions. The article states that this belief in miracles combined with an overall distrust in the health care system — due to a history of medical experimentation and centuries of health care disparities — have led many African Americans to depend on their belief in God’s healing power to perform miracles and heal family members who are seriously ill.

The UAB Center for Palliative and Supportive Care offers the African American Communities Speak program to clinicians. This skills-based training incorporates videos created by the African American community to train clinicians on the community’s cultural values, lived experiences and recommendations for care. Self-reflection and active learning techniques provide participants the foundation needed for changed behavior and improved communication with patients and caregivers.

This trust in God, belief in miracles and distrust of clinicians may lead to a seriously ill African American Christian patient to request life-sustaining medical interventions even when recommendations call for supportive care. When facing terminal illness, this hope in miracles often influences the patient’s medical decisions and fuels a desire for life-sustaining interventions. The paper states that these decisions are also rooted in a belief that God ultimately decides the outcome of life, not the health care system. 

Researchers say the key to goal-concordant care is for clinicians to allow these patients to process clinical information through their preferred spiritual lens and to allow them time to have critical conversations with those in their network.

“We are hopeful that clinicians will read this article and take away the importance of religious and cultural belief systems in this particular patient population,” said Moneka Thompson, staff chaplain in the Department of Pastoral Care and co-author. “Specifically, we want everyone to understand how the values and beliefs of this particular population may impact their end-of-life preferences and decision-making. This article is the combined effort of five very different women from quite different backgrounds.  Our collective goal was to create a think-piece towards movement of health care for this population in a meaningful and more equitable direction. At the end of the day, we want to support health care equity as much as possible.”

Thompson says that there are a few steps clinicians can take to help ensure they are providing goal-concordant care to their patients.

“First, we encourage clinicians to be aware of their own biases towards this patient population that may fuel incongruent care,” Thompson said. “Second, we hope that clinicians will utilize communication practices that encourage cultural sensitivity, humility and curiosity. Finally, we want clinicians to be fully present to the variety of religious and cultural beliefs that this population will present without feeling the need to obtain this value system for themselves or compromise their own.”

Complete Article ↪HERE↩!

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I went from being a labor-and-delivery nurse to a death doula.

I help people who want to die on their own terms by refusing food and water.

People who voluntarily stop eating and drinking tend to be terminally ill people whose doctors can’t predict how long they have left to live.

By Jane Ridley

  • Nancy Simmers is a death doula whose clients decide to end their lives by refusing food and drink.
  • A former labor-and-delivery nurse, Simmers says the process of death is similar to birth.
  • This is Simmers’ story, as told to Jane Ridley.

This as-told-to essay is based on a conversation with Nancy Simmers. It has been edited for length and clarity.

Most people are taken aback when they hear that I’m a death doula. They’re shocked when I say that I work exclusively with people who want to die on their own terms, by voluntarily stopping eating and drinking.

The method, known as VSED, might seem terrible at first. But it lets you take control of the circumstances of your death.

Most people support the idea of the power of the individual. They understand someone who says, “It’s my life, let me get on with it.” But they feel uncomfortable when someone says the same thing about their death.

I used to be a labor-and-delivery nurse. Over the years, I’ve come to see death and birth as physical, emotional, and spiritual thresholds. They are similar processes. They involve uncertainty, fear of the unknown, and transformation. Both require courage, surrender, release, compassion, and support from others.

Some people reach a point in their life and decide they’re done

The US law largely doesn’t prevent people from choosing to end their life by VSED, which doesn’t require permission from a physician.

Many people who opt for VSED have a terminal illness. But it’s almost impossible to get a firm prognosis for neurological diseases such as ALS and Parkinson’s. People can suffer for years as their bodies and mental capacities deteriorate. Some people reach a certain point and say, “I’m done.” A person in their 90s who has lost their vision, hearing, and bladder control may feel that their quality of life is nil.

A headshot of death doula Nancy Simmers
Nancy Simmers, a death doula, helps people who opt to stop eating and drinking, a method of death known as VSED.

If a doctor won’t certify that you have less than six months to live, you are not eligible for “death with dignity.” The laws — which apply in eight states and Washington, DC — allow people to take lethal drugs under medical supervision.

VSED is another version of death with dignity. Each VSED death I’ve attended has been different, but not undignified. Most of my clients die in their own homes surrounded by their loved ones. It’s a gift. It wasn’t VSED, but when my father was dying of cancer in 1991, my sons — 8 and 5 — were in and out of their grandpa’s room. It doesn’t do anybody any favors to be frightened of death.

VSED requires a lot of planning

A lot of people know nothing — or very little —about VSED. There are some scary myths. People think that it involves great suffering and that it goes on indefinitely. They assume it will affect your life-insurance policy.

VSED is not to be considered lightly. It needs lots of careful planning. It’s reversible up to a point, and there are medications to ease the transition. Family members usually know about the decision and agree that it’s the choice of the individual concerned. Life insurance is mostly straightforward because the doctor does not write “suicide” as the cause of death; they note the person’s underlying condition, such as cancer.

An altar full of photos that pays tribute to the person dying
Simmers set up an altar to celebrate the life of a woman who chose VSED.

People considering VSED in my home county of Whatcom, Washington, find me via word of mouth or online. I’ll arrange to meet with them and their family. My partner, Andrea Fenwick, and I give frank and honest answers. There’s no sugarcoating. We’re part of the nonprofit VSED Resources Northwest, though we advise people across the world.

We can understand why families question their loved one’s decisions. It depends on the case, but we might tell them: “This is your beloved person, and your beloved person is suffering. It’s their body and their choice.”

We’ll tell the family, “Although you will suffer because you’ll miss this person, it’s their choice to end their suffering — how can you be supportive of this choice?”

Once things are decided, we mark the start date with a little ceremony. We celebrate the person and their life and their choice. We thank them and shower them with love and gratitude.

Many families make a small altar. It’s the focal point of their room. They’ll decorate it with family photos and precious items that remind the loved one and their visitors about their interests and skills. It’s a reflection of a life well lived.

I like to light a candle, symbolizing the person as a spirit. After the death, it becomes part of a leave-taking ceremony and is blown out.

VSED is a serious commitment, but it doesn’t have to be a solemn affair. My last client lightened things up with a touch of humor. We’d ask how she was feeling during her first few days of VSED — she joked about wanting a cold Pepsi.

I tell my folks that dying has been around for millions of years. Your body knows what to do. Just trust your body. Our bodies know how to breathe. Our bodies know how to process food. Our bodies know how to birth. They know how to die.

It can be hard for families to watch as their loved one becomes confused because of dehydration

VSED takes an average of nine to 11 days. The person is usually up and about for the first few days. But the middle stage, which can last almost a week, is the marathon.

They’ll need medication — a mixture of morphine and anxiety drugs — to help them through the confusion and delirium caused by dehydration. It’s hard for the family to watch. A designated person will step in if the loved one calls for food or water.

The final stage lasts about three days. Dehydration makes people sleepy. It’s reassuring for everyone because you lose consciousness when your body goes into crisis mode.

The lack of fluids affects your kidneys and liver. The excess bilirubin makes the skin look yellow. The feet and the fingertips turn blue. Breathing becomes shallow or agonal.

Friends and relatives gather at the bedside to say goodbye. It reminds me of families coming together to welcome a newborn. We want the very best for the baby; we support them when their journey in life begins. People deserve the same support when the journey ends.

Complete Article ↪HERE↩!

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The Death Predictor

— A Helpful New Tool or an Ethical Morass?

by Karen Weintraub

Whenever Eric Karl Oermann has to tell a patient about a terrible prognosis, their first question is always: “how long do I have?” Oermann would like to offer a precise answer, to provide some certainty and help guide treatment. But although he’s one of the country’s foremost experts in medical artificial intelligence, Oermann is still dependent on a computer algorithm that’s often wrong.

Doctors are notoriously terrible at guessing how long their patients will live.

Artificial intelligence, now often called deep learning or neural networks, has radically transformed language and image processing. It’s allowed computers to play chess better than the world’s grand masters and outwit the best Jeopardy players. But it still can’t precisely tell a doctor how long a patient has left – or how to help that person live longer.

Someday, researchers predict, computers will be able to watch a video of a patient to determine their health status. Doctors will no longer have to spend hours inputting data into medical records. And computers will do a better job than specialists at identifying tiny tumors, impending crises, and, yes, figuring out how long the patient has to live. Oermann, a neurosurgeon at Mount Sinai, says all that technology will allow doctors to spend more time doing what they do best: talking with their patients. “I want to see more deep learning and computers in a clinical setting,” he says, “so there can be more human interaction.” But those days are still at least three to five years off, Oermann and other researchers say.

Doctors are notoriously terrible at guessing how long their patients will live, says Nigam Shah, an associate professor at Stanford University and assistant director of the school’s Center for Biomedical Informatics Research. Doctors don’t want to believe that their patient – whom they’ve come to like – will die. “Doctors over-estimate survival many-fold,” Shah says. “How do you go into work, in say, oncology, and not be delusionally optimistic? You have to be.”

But patients near the end of life will get better treatment – and even live longer – if they are overseen by hospice or palliative care, research shows. So, instead of relying on human bias to select those whose lives are nearing their end, Shah and his colleagues showed that they could use a deep learning algorithm based on medical records to flag incoming patients with a life expectancy of three months to a year. They use that data to indicate who might need palliative care. Then, the palliative care team can reach out to treating physicians proactively, instead of relying on their referrals or taking the time to read extensive medical charts.

But, although the system works well, Shah isn’t yet sure if such indicators actually get the appropriate patients into palliative care. He’s recently partnered with a palliative care doctor to run a gold-standard clinical trial to test whether patients who are flagged by this algorithm are indeed a better match for palliative care.

“What is effective from a health system perspective might not be effective from a treating physician’s perspective and might not be effective from the patient’s perspective,” Shah notes. “I don’t have a good way to guess everybody’s reaction without actually studying it.” Whether palliative care is appropriate, for instance, depends on more than just the patient’s health status. “If the patient’s not ready, the family’s not ready and the doctor’s not ready, then you’re just banging your head against the wall,” Shah says. “Given limited capacity, it’s a waste of resources” to put that person in palliative care.

The algorithm isn’t perfect, but “on balance, it leads to better decisions more often.”

Alexander Smith and Sei Lee, both palliative care doctors, work together at the University of California, San Francisco, to develop predictions for patients who come to the hospital with a complicated prognosis or a history of decline. Their algorithm, they say, helps decide if this patient’s problems – which might include diabetes, heart disease, a slow-growing cancer, and memory issues – make them eligible for hospice. The algorithm isn’t perfect, they both agree, but “on balance, it leads to better decisions more often,” Smith says.

Bethany Percha, an assistant professor at Mount Sinai, says that an algorithm may tell doctors that their patient is trending downward, but it doesn’t do anything to change that trajectory. “Even if you can predict something, what can you do about it?” Algorithms may be able to offer treatment suggestions – but not what specific actions will alter a patient’s future, says Percha, also the chief technology officer of Precise Health Enterprise, a product development group within Mount Sinai. And the algorithms remain challenging to develop. Electronic medical records may be great at her hospital, but if the patient dies at a different one, her system won’t know. If she wants to be certain a patient has died, she has to merge social security records of death with her system’s medical records – a time-consuming and cumbersome process.

An algorithm that learns from biased data will be biased, Shah says. Patients who are poor or African American historically have had worse health outcomes. If researchers train an algorithm on data that includes those biases, they get baked into the algorithms, which can then lead to a self-fulfilling prophesy. Smith and Lee say they’ve taken race out of their algorithms to avoid this bias.

Age is even trickier. There’s no question that someone’s risk of illness and death goes up with age. But an 85-year-old who breaks a hip running a marathon should probably be treated very differently than an 85-year-old who breaks a hip trying to get out of a chair in a dementia care unit. That’s why the doctor can never be taken out of the equation, Shah says. Human judgment will always be required in medical care and an algorithm should never be followed blindly, he says.

Experts say that the flaws in artificial intelligence algorithms shouldn’t prevent people from using them – carefully.

Researchers are also concerned that their algorithms will be used to ration care, or that insurance companies will use their data to justify a rate increase. If an algorithm predicts a patient is going to end up back in the hospital soon, “who’s benefitting from knowing a patient is going to be readmitted? Probably the insurance company,” Percha says.

Still, Percha and others say, the flaws in artificial intelligence algorithms shouldn’t prevent people from using them – carefully. “These are new and exciting tools that have a lot of potential uses. We need to be conscious about how to use them going forward, but it doesn’t mean we shouldn’t go down this road,” she says. “I think the potential benefits outweigh the risks, especially because we’ve barely scratched the surface of what big data can do right now.”

Complete Article ↪HERE↩!

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A researcher’s quest to make end-of-life care more equitable for Black Americans

Black Americans are at greater risk for serious illnesses like dementia and kidney failure, but they’re less likely to receive the kinds of care that can make living and dying with these diseases less painful.

By Leslie Walker, Dan Gorenstein

The four months of care Annie Mae Bullock received for her stage 4 lung cancer were rocky at best. But the final three days of that care, her daughter Karen Bullock said, were excellent.

Annie Mae spent those few days in hospice care at home surrounded by loved ones singing, chanting and praying as she passed.

“We did all of the things we knew she would have wanted us to do,” Karen Bullock said. “And we didn’t have to worry about whether we were being judged.”

That was one of the few times during those hard four months that Bullock and her family hadn’t felt judged. They felt judged when Annie Mae initially declined chemotherapy and later on, when she asked why she needed a legal document outlining her end-of-life wishes.

Bullock is grateful that her mother had those days at home in hospice. She knows many Black families don’t get them.

Research shows that, for seriously ill patients, high-quality supports like advance care planning, hospice and palliative care can alleviate suffering for them – and their families. Benefits include reduced pain and emotional distress, and fewer unwanted interventions.

But Black patients, who are at greater risk for many serious illnesses, are less likely to receive these supports than White patients. For example, just 35 percent of Black seniors eligible for hospice care through Medicare actually receive it, compared to 50 percent of White Medicare beneficiaries.

A lonely road

This is a world Bullock has personal and professional experience navigating. She is a licensed clinical social worker and professor at the Boston College School of Social Work. And for the last two decades, Bullock has been studying why seriously ill Black patients – with incurable conditions like cancer or kidney failure – are less likely to get palliative care, and what it would take to change that.

“In retrospect, seeing that my mother could actually die well is what set me on this journey,” Bullock said.

She has struggled to find funding for her work, told repeatedly to focus on other topics or use data sets that already exist.

“But the large data sets don’t answer the questions that have not yet been asked,” Bullock said.

Through two decades of persistence amassing small studies and focus groups, and the work of others, Bullock has identified some of the barriers. The two biggest, she said, are the failure of the U.S. health care system to build trust with Black families and a lack of culturally competent care.

A system that can’t be trusted in life or in death 

America’s legacy of racism runs deep throughout its health care system, shaping the care Black patients receive and the medical decisions they make – including at the end of life, according to Bullock.

She recalled conversations with Black seniors who remember when their local hospital was segregated or when their communities were targeted with toxic waste sites.

“It’s difficult to convince someone that there is a team of people who want you to die well, when nobody cared if you lived well,” Bullock said.

Racial bias still exists in health care today. Nearly 1 in 3 Black adults in a recent survey said they had been treated poorly by a health care provider because of their race or ethnicity. More than 20 studies document that seriously ill Black patients are less likely to have their pain properly treated, diagnosed or managed.

Bullock said it is a rational decision for people to reject services from a system that has not proven trustworthy.

A culturally incongruent model of care

Bullock has focused a lot of her work on hospice – the kind of end-of-life care that benefitted her own mom. It often happens at home and is free of aggressive intervention.

But after studying the care experiences of more than 1,000 older Black adults and caregivers, Bullock came to the conclusion that certain aspects of the hospice care philosophy, which originated in Europe, are what she calls culturally incongruent.

“This is a European model of care that many White people find to be extremely helpful in dying a good death and having their needs met until the end,” Bullock said.

But she points to the spiritual care component of hospice as one common source of incompatibility. Surveys show spirituality plays a much larger role in the lives of Black families, but White hospice workers may not be familiar with those religious traditions and beliefs.

The least ideal time to explain your cultural preferences, said Bullock, is when you are sick or dying.

“When a patient and or family member has to educate you about their culture while they are receiving care, the message you’re sending is, ‘I don’t know anything about you. I haven’t learned to take care of you,’” she said.

A path toward more equitable care for the seriously ill

For years, experts have been calling for greater equity in care for the seriously ill and dying, but the COVID-19 pandemic has brought renewed attention to the issue.

Some experts, including Bullock, are prioritizing collecting better data and diversifying the medical workforce. Others are focused on expanding access to palliative care, which offers much of the same physical, emotional and spiritual support as hospice without requiring patients to cease aggressive interventions. Research shows Black patients tend to prefer having more intensive treatment options available even at the end of life.

Additional attempts to reduce racial disparities include programs that engage Black churches to reach more patients and those that offer more culturally tailored palliative care. More research is needed to evaluate the effectiveness and scalability of these and other interventions.

Bullock acknowledged working on health care equity can sometimes feel like shouting into a void. On especially hard days she returns to the memory of her mother’s final moments.

As Annie Mae appeared to lose consciousness, Bullock’s family wondered if they should continue their praying and singing and chanting.

It was the hospice social worker who explained the hospice philosophy that hearing is the last sense to go, and gave them a piece of advice Bullock will never forget.

“Continue to say the things you want to say,” the worker urged the Bullock family. “She can hear you even if she can’t respond.”

Complete Article ↪HERE↩!

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A new vision for death and dying

— The Lancet Commission on the Value of Death

The story of dying in the 21st century is a story of paradox. Covid-19 has meant people have died the ultimate medicalised deaths, often alone in hospitals with little communication with their families. But in other settings, including in some lower income countries, many people remain undertreated, dying of preventable conditions and without access to basic pain relief. The unbalanced and contradictory picture of death and dying is the basis for the Lancet Commission on the Value of Death. Drawing on multidisciplinary perspectives from around the globe, the Commissioners argue that death and life are bound together: without death there would be no life. The Commission proposes a new vision for death and dying, with greater community involvement alongside health and social care services, and increased bereavement support.

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End-of-life Planning

— Why to Start Young

You’re too busy and alive to think about death when you’re young. “It always seems too early, until it’s too late,” declared the National Healthcare Decisions Day a few years ago. You want medical insurance for a sudden illness or injury. You ask our employer and government to offer retirement benefits to retire well. What about your hope to die well? Although you can’t control your future, you can plan for it.

By Sharleen Lucas, RN

End-of-life planning – also known as advance care planning – gives you a powerful voice if illness or injury leaves you unable to speak for yourself.

Hard to imagine, right? A day when an illness or injury steals your ability to make decisions for yourself. When you’re young and buzzing through your days of hard work and fun, death is an abstract, nebulous, and distant concern. Until a pandemic hits. Or you walk away from a nearly fatal motorcycle accident. Or your first child is born. Suddenly, death creeps closer and these moments make you think a little harder about life and death.

In 2020 according to the Centers for Disease Control and Prevention, unintentional injury was the leading cause of death for 15 – 44-year-old Americans. No one knows what tomorrow brings, as the old saying goes.

But wait, isn’t thinking about death harmful to young people?

There’s no getting around it. When you plan for end-of-life care, you have to think about death.

I asked palliative care psychologist Dr. Dwain Fehon if it’s mentally healthy for young people to complete advance directives. As Associate Professor, Chief Psychologist, and Director of the Behavior Medicine Service for the Yale School of Medicine and Yale New Haven Hospital, Dr. Fehon has worked with countless patients of all ages facing mental and terminal illnesses.

His answers were enlightening. “When we can talk openly about difficult topics early in life, it’s just so healthy and helpful,” he expressed in his soft, kind voice. “It allows you to formulate ideas and to take in the thoughts and opinions of others so that you’re not alone or isolated with your thoughts or fears.”

There’s certainly evidence to support his words. When it’s explained correctly, most younger people want to talk about end-of-life issues.

In 2022, the American Journal of Hospice and Palliative Care published a study of young people’s perspectives on end-of-life planning. The researchers talked with 30 white and Black participants. They found that 87% of them were comfortable talking about the subject and wanted to make their own end-of-life decisions. Even though the sample size was small, this research is consistent with other studies.

A study published in 2019 found that young adults welcomed the chance to discuss advanced care planning. They even wanted more information about it. Researchers found a significant improvement in their “self-perception of comfort, confidence, certainty, and knowledge” about death planning. They recommended more end-of-life talks with young people.

When you’re in your 20s and 30s, paving your path and making your own choices are top values. Planning for death empowers you to voice your opinion about the medical care you want if you can’t speak for yourself.

In 2015 researchers published findings from their end-of-life discussions with 56 young people between the ages of 18-30. They found each subject felt death planning was a valuable way to express their individuality. They also liked that advanced care plans can change and grow as they did.

Surprisingly, most young and healthy people are willing and even eager to talk about death planning.

“It’s interesting, thinking about death gets you thinking about life. There’s value in thinking about these things, and when we can think about it, it helps to reinforce a general acceptance within ourselves that death is a part of life. And it’s okay to talk about. It’s not a taboo topic that needs to be kept quiet.” — Dr. Fehon

His words reminded me of the young, healthy mortician Caitlyn Doughty, who founded the Death Positive Movement in 2011. Her goal is to help people of all ages break their silence about death. Topics kept in the dark create more confusion, robbing people of their power to understand the issue and make their own choices about it.

Death planning is actually about life

Dr. Fehon’s wisdom here continues. “In the palliative care world, we have a concept called double awareness,” he told me. “One component is life engagement, and the other component is death contemplation. The idea is to hold these two concepts in our lives. We can contemplate death and still be engaged in life.”

The lightbulb lit up in my head. Death contemplation can engage us deeper into life. This is why many young people like it. The young participants in these studies had the chance to clarify what they want from life now and in the future.

But if we think about end-of-life plans and find ourselves disengaging from life, something’s wrong. We may be overly preoccupied with dark fears or sadness about death. In these bleak moments, we’re likely isolating ourselves from loved ones or others who can help us with the process.

End-of-life planning is a process that involves your loved ones. They need to know what decisions you’d like them to make if you can no longer speak for yourself. So, no one should go through the process alone.

Alright, I’m convinced. But how do I start end-of-life planning?

We can sum up the process into three steps.

  1. Complete your advance directives and make them legal.
  2. Post them openly in your home and give them to loved ones and your doctors.
  3. Talk about them with your health proxy, your loved ones, and your medical team.

What are advance directives?

Advance directives are the documents that make your choices legal. These documents include a living will and a power of attorney for health care.

A living will describe the type of end-of-life medical care you want in certain situations. It directs and guides your chosen decision-maker and medical team to make decisions for you. Your instructions in the living will, can be as creative as you want.

These directives are kind to your family. Instead of agonizing over medical decisions without your input, they can more confidently and peacefully make the right decisions for you.

A power of attorney for health care legally names the person you want to make your healthcare decisions when you cannot. This decision-maker is also called a health proxy. They become your voice when you can’t speak for yourself.

Your advance directives are yours to define and only become active when you are suddenly, by illness or injury, unable to make your own decisions.

Where do I get the paperwork?

For a paper copy, start with your doctor’s office or the closest hospital. They often stock advance care paperwork that meets your state’s standards.

Not surprising, there are many online options to suit your needs. These sites are a great place to start because they help you think about your end-of-life wishes and answer a lot of questions. Some are free, and some cost as little as five dollars. You can get trustworthy free documents at CaringInfo, MyDirectives, and Prepare for Your Care.

But these details only scratch the surface. Planning can feel overwhelming, but don’t let that stop you. Push through for the sake of your life now. For the sake of your loved ones.

If it gets hard to talk about or feels too complicated, consider talking with a local palliative care social worker or chaplain. End-of-life doulas also help people safely talk about death and advance care plans.

Remember, death planning is about life. Let these words from Dr. Fehon guide you. “What does living well mean now [to you]? Whatever your circumstances, whether you’re healthy or not, [end-of-life planning] is a recognition of what’s important and to try to live in a way that is in alignment with your values, your priorities authentically.”

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